CLL + Trisomy 8?

[RyStock]

Was diagnosed with CLL in 2018 at 45yrs old, started treatment in 2019 and just finished my 19th month of Obinituzamab, Venetoclax, and Ibrutinib trial. Had BMB and showed remaining small population of B-cells - dang! Also showed Trisomy 8? Seems very rare for CLL patient to have Trisomy 8. Oncologist doesn't know what to do - says watch and wait now (no more treatment), but probably indicative of Myeloid Leukemia, in addition to CLL. Anyone have a similar experience?

[lankisterguy Volunteer]

Hi RyStock, -

I hope that someone will respond to your question about Trisomy 8, but I fear that it will be extremely rare.

-

You may already know that the typical FISH testing looks for the (4) most common genetic abnormalities, and those cover about 80% of patients. See:

hindawi.com/journals/bmri/2...

SNIP Chromosomal abnormalities in chronic lymphocytic leukemia (CLL) are detected in up to 80% of patients. Among them, deletions of 11q, 13q, 17p, and trisomy 12 have a known prognostic value and play an important role in CLL pathogenesis and evolution, determining patients outcome and therapeutic strategies.

-

However less common genetic changes like 6q and "In the last years, next generation sequencing (NGS) methods have identified a wide range of gene mutations (e.g., TP53, NOTCH1, SF3B1, and BIRC3) which have improved our knowledge about CLL development, allowing us to refine both the prognostic subgroups and better therapeutic strategies."

-

I recall a comment by Dr. Furman that Next Generation Sequencing of the full genome of numerous CLL patients has identified over 200 genetic abnormalities, but the researchers are struggling to find which of those changes are significant and which have no detectible effect on patients.

-

If you would like to pursue this question further and are in the USA, you may want to register here for a free 2nd opinion from one of the top CLL experts & reasearch scientists.

cllsociety.org/cll-society-...

-

Len

[RyStock]

Thanks for everyone's feedback. It turns out that my records had been mixed up with those of another patient. I am actually in complete remission (no detectable CLL cells) and no Trisomy 8. This is about the 5th time that my doctor/clinic has made a mistake like this. Far past time to find a new doctor - I've been hesitant to do so because he has been a family friend for many years prior to my diagnosis. But the poor level of care is just unacceptable.

Any suggestions for CLL specialist in Eastern WA or Northern Idaho would be appreciated.

[Newdawn Administrator in reply to RyStock]

How horrendously neglectful of them RyStock! 😨 However I’m delighted to hear that you’re now uMRD! I’ll admit I’d not come across Trisomy 8 so couldn’t comment initially.

It’s not my area of the world but I sincerely hope you can find a more reliable specialist in your area.

Newdawn